WHAT: New UA Pediatric Center First in Southwest to Provide Patient Care, Education, Research in Underdiagnosed Disorder
WHY: Grand Opening Celebration of the “Children’s Postinfectious Autoimmune Encephalopathy (CPAE) Center of Excellence at the UA Steele Children’s Research Center,” which is the first in the Southwest to bring clinical care, teaching, translational medicine and basic science research together to address a spectrum of neuropsychiatric disorders that historically have been misdiagnosed or underdiagnosed in children.
WHEN: TUESDAY, AUG. 30, 11 A.M. – 1 P.M.
WHERE: Kiewit Auditorium, University of Arizona Cancer Center, 1515 N. Campbell Ave., Tucson, Ariz.
The UA Steele Children’s Research Center and Banner Children’s at Diamond Children’s Medical Center are celebrating the grand opening of a new center that is the first in the Southwest to bring clinical care, teaching, and research together to treat a family of acute-onset neuropsychiatric disorders that historically have been misdiagnosed or undiagnosed in children.
The event will take place in Kiewit Auditorium at the University of Arizona Cancer Center, Tuesday, Aug. 30, 11 a.m.
The “Children’s Postinfectious Autoimmune Encephalopathy (CPAE) Center of Excellence at the UA Steele Children’s Research Center,” located within the University of Arizona Health Sciences, represents the first “center of excellence” to implement a model of clinical care, teaching and research to treat and possibly cure a spectrum of autoimmune encephalopathies, such as PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) and Sydenham's chorea.
Clinical services will be provided at Banner – Diamond Children’s and research will be conducted at the UA Steele Center.
About Children’s Postinfectious Autoimmune Encephalopathy (CPAE)
Children’s postinfectious autoimmune encephalopathies, like other autoimmune disorders, are on the rise in children in the Western world. These diseases occur when a child’s immune system, while fighting off a virus or infection, mistakenly targets or disrupts a part of the child’s own body. In CPAE, the child’s immune system attacks the brain, causing a range of neuropsychiatric symptoms.
Symptoms typically occur suddenly—sometimes overnight.
Some of the symptoms include:
- Obsessive-compulsive disorder (OCD)
- Tics (motor and phonic)
- Severe anxiety
- Attention deficit hyperactivity disorder
- Restrictive eating
- Depression and mood changes
- Irritability and aggression
- Changes in handwriting
- Separation anxiety
- Poor academic performance
- Frequent urination
- Sensory sensitivities
From Despair to Healing: Holland' Story
Karen and her husband, Charles, of Scottsdale know the utter despair parents feel having a very sick child and no answers.
“One day Holland was a happy and vibrant child, and the next day she woke up with terrible anxieties, tics and migraines. She was afraid to eat and afraid to go to school,” recalled Karen.
After two years of searching for answers, Holland eventually was diagnosed with PANS/PANDAS and brought to Diamond Children’s.
Once stabilized, Holland received an IVIG treatment. “That was an absolute miracle,” said Karen. “She went from a little girl who wasn’t speaking or eating, who couldn’t walk or stand the light, was bedridden and in constant pain, to walking, talking, singing, dancing and playing.
“We were so grateful to find this new center in our own backyard in Tucson. The UA/Banner medical team gave us our daughter back,” said Karen.